Celebrating 30 Years of Service to the PKU Community

National PKU News celebrates its 30th anniversary this month, April 2019. To mark the occasion, PKU News’ intern, Gisele Miler, who is Dietetic Intern and Masters student in Nutrition at Auburn University, interviewed our founder, Virginia Schuett, about the history and evolution of the organization. What follows is an edited version of that interview.

When Virginia  Schuett founded PKU News in 1989, she’d been a nutritionist at University of Wisconsin’s metabolic clinic for 17 years. After moving to Seattle for personal reasons, Virginia saw she had “the perfect opportunity to start something new. There was a huge need for communication between families and also clinics, and no national newsletter or way of connecting people (way before the internet!).”

When she founded National PKU News, Virginia didn’t know what to expect. “I had no idea what the future held, whether a national newsletter was really what people craved or not, whether a national newsletter could succeed financially and whether I would enjoy being an editor after 17 years as a nutritionist in a metabolic clinic. I just thought it was worth giving it a try. I had always liked writing and had even started a statewide newsletter in Wisconsin that I published for many years so that helped me to think my idea was at least reasonable!”

Those questions were soon answered: “the immediate response to the first issue was so overwhelmingly positive,” said Virginia . “After just a few months, I had 800 subscribers, as I recall. And many people sent donations as well as the subscription fee, making it seem promising to think that it could thrive.” Within the first year the newsletter had more than 1000 subscribers. Despite its name, “National” PKU News has always served an international audience: at its peak there were subscribers in 35 different countries.

Without the internet to assist, Virginia reached out to clinics to let people know about PKU News and the newsletter, with help from a project that had support from the National Institutes of Health (NIH). “The year before I started the newsletter, I had done a survey of clinics to get information on how many patients they served and various aspects of those patients and clinic policies towards stopping or continuing the diet beyond a certain age, and I also updated contact information (and this became a booklet that was published for clinic use). So I had current connections with a lot of clinics and that was the basis for spreading the word.” According to Ginny, “subscribers appreciated the variety of news I put in the newsletter, for sure, and also the recipes and diet information, as well as the kid’s page. “

In 1998, National PKU News launched its web site at pkunews.org. Virginia recalls, “I think it was the very first PKU-related website. Over the years, it expanded greatly and I think was a great source of information in addition to the newsletter.”

The landscape of PKU life has changed greatly over the past three decades, and even more so in the most recent decade. Of the last ten years, Virginia recognizes these as the most important advances: “Of course, the large amount of research that is ongoing, especially on diet alternatives and genetics is impressive, but also the many advancements for the diet itself: the variety of formulas available for every taste and every need (there was only 1 formula, Lofenalac, when I first got involved with PKU in 1972!) and the variety of other low protein products (when I started in PKU there was only wheat starch, a single baking mix, a canned bread, and several shapes of pasta) that have been made available as well as the huge number of new recipes that various people have developed.” In 2018, PKU News merged with CookForLove.org to help expand the reach of these recipes and allow the talented chefs in the low-protein community to share their personal recipes with the community at large, with phe and protein values verified by HowMuchPhe.org.

Asked what the most important thing for her personally about PKU News, Virginia responded, “the newsletter and everything that I did for the PKU community, including the many food lists and cookbooks that I wrote over the years, was a source of pleasure and satisfaction for me, a really rewarding career that spanned 26 years (and 17 years before that in the clinic). I especially loved getting to learn about new research and to connect with the people who did it, including in many other countries. I also loved the communications I had with so many families from all over the world, the friendships I developed, and the sense that what I was doing was both needed and appreciated by so many in the PKU community. I miss all of that now though retirement is also wonderful in its way. I am just happy that National PKU News has kept going, and in an entirely new direction with the creative energy of Sarah Chamberlin at the helm. I was “old school” and Sarah is “new school”, with all of the technical skills needed to bring the organization into the modern era and continue to serve the PKU community in the most updated way. I am so grateful to Sarah, and to Board member Jeb Haber, for steering National PKU News into the future so deftly and successfully. Without them, National PKU News would have gone away when I retired.”